IACFS: Dr. Byron's Hyde booklet on ME

I had your post in mind when I went to see my GP, yesterday. I said to my doctor that what I have is DEFINITELY a viral infection that does not go away. He told me that the viral theory could be true. Then, he talked about the Epstein-Barr virus and how everyone thought it was causing CFS. He also said that there is one disease (I can't remember which one he said, maybe Creutzfeldt-Jakob?) where scientists found that it is caused by a prion. He added: "A few years ago, we did not even know that prions existed. So, yes, it could be something like that."

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I'm not sure if the EBV causation theory is valid anymore. I could be wrong but I think that was what they originally thought years ago.

Has your doctor never tested you for any hormone problems? Thyroid?, cortisol? DHEA? Mine are mildly low, typical for ME/CFS but not low enough to fit into a different diagnosis. My GP sent me to an endocrinologist a few years ago who said I had low am cortisol. I was sent for a cortisol stimulation testing which was normal enough to rule out Addisons Disease which is all the endo. really cared about. For the thyroid I am on meds now although they haven't really helped. Then again who nows, maybe I would be feeling worse than I do if I wasn't on it.

I wrote this a few years ago on another list regarding the Nightingale Definition. I am splitting it into 3 posts in the hope of making it easier to read:

I was reading the new Nightingale Definition of ME (the full version can be found at http://www.nightingale.ca/documents/Nightingale_ME_Definition.pdf ) and I thought it had a few flaws and that it would be problematic to put to widespread use as a result of lack of access to tests or specialists to interpret these specialised tests. Also I think it might leave a doctor with the impression than a lot of our problems can be tested for at the moment but I still think there is a lot of work to do before we can explain all the symptoms, or their severity, or how they fit together. So I still think the Canadian Consensus definition is more usable to the average doctor.

The problem I have is that while the definition criticises graded exercise programs on the one hand, on the other hand it seems to advocate it. The definition contains comments which could be interpreted (and I think could certainly be used) by some doctors to get the patient to increase activity even when they might not be able to, or to start a graded exercise program, even if a less aggressive GE program than people would have ended up on years ago. These comments could also be used by some to blame the patient for the severity and longevity of their illness.

The comment is towards the end of the definition on the Nightingale Foundation website (Section I : "Graduated Exercise and the Myalgic Encephalomyelitis Patient".

This is (quote) :

"Once the patient reaches a plateau, or starts to improve, lack of activity will eventually make the patient worse. Depending upon the degree of physiological brain dysfunction, patients should start to increase stressors slowly even if this means a temporary setback. This is neither an easy nor a fast process and again, depending upon the degree of brain dysfunction, may take years until the patient can resume a relatively normal life activity. (3)"

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This is then immediately followed by the better comment

"If the M.E. patient conforms to the guidelines set out in this definition, the insurance company can only make the patient worse by instituting progressive aggressive forced physical and intellectual activity. M.E. is a variable but always, serious diffuse brain injury and permanent damage can be done to the M.E. patient by non-judicious pseudo-treatment."

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I think there are quite a few flaws in the first few three sentences quoted above.

1. First of all the problems with the first sentence:

"Once the patient reaches a plateau, or starts to improve, lack of activity will eventually make the patient worse."

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A plateau is usually used to signify that a patient has reached a point where they are stuck at for a while (could be years) where they do not improve and where they cannot do more. So if a patient is doing as much as they are already able to do but have plateaued what are they supposed to do? And what evidence is there that lack of activity will make them worse?

The plateau could be at any level, as it is not specified, so a patient could be up out of bed most of the day (so not suffering any negative effects from permanent bedrest - I accept that some patients are just to ill to get out of bed most of the time) or they could even be getting a moderate amount of exercise but not able to do more, and what evidence is there for these people getting worse through 'lack of activity'?

Obviously for general health reasons it is good to be as active as possible but is there any real evidence that lack of activity makes ME specifically worse? Personally I do feel better when I do less, or if I cut out certain activities I have energy for other ones.

I think that this sentence saying patients will get worse through lack of activity is a potentially very damaging and dangerous (not to mention unproven).

This comment could also be used to blame the patient for getting sicker or not getting better. So someone might think that if lack of activity makes the patient worse then the patient is at fault for getting worse because they did not do enough activity. We know that in the vast majority of cases patients will be doing as much as they can and it will be the illness itself that for some organic reason that gets worse (because that is how the illness seems to progress in some people or there is an environmental stressor such as the patient gets an infection, does too much, has a drug reaction or something like this) not because of lack of activity on the behalf of the patient.

If lack of activity was making people worse where are all the people complaining about how bad they feel the day after resting or taking it easy? Or saying that they feel so much worse when they do less but that exercising and more activity makes their symptoms better?

Interestingly enough in another part of the definition the fact that people can get worse for some organic reason is implied. Byron Hyde says of what he calls Type 3 on the SPECT Scan (I don't think this categorising system has been verified by an outside person or by a blinded study but he may be right). He writes of these cases:

"

Both sides of the cortex, and either one or all of the following: posterior chamber organs, (the pons and cerebellum), limbic system, the subcortical and brainstem structures are involved. Type 3B are the most severely affected patients and the most likely to be progressive or demonstrate little or no improvement with time."

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So this implies that that there can be organic reasons, possibly something to do with the neurological system, that some patients get worse over time.

2. The next sentence in this part of the definition hat I found problematic is:

"Depending upon the degree of physiological brain dysfunction, patients should start to increase stressors slowly even if this means a temporary setback."

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This sounds like graded exercise (or potentially will be interpreted as advocating that) to me, and even a bad version of it as it is accepting an initial worsening and setback. And there is no reason to think that if you feel worse from an activity - I mean if it causes an ME flare up, that horrible sick feeling from doing too much - that this will change the more you do it, except that you are risking a major setback if you keep trying to push through it. Even some (most?) Graded Exercise fanatics nowdays suggest starting at a level below that which you are currently at, or think you can do, and that you start at a level that you can comfortably maintain even on the worst days, and build up from that.

I think that most patients will naturally increase activity as they improve but will try to increase at a fairly comfortable level so that they don't set themselves back.

Was there any need to tell patients, even ones who are improving (and to put in a definition), to start doing more? How many won't increase their activity levels once they are able to? Even out of sheer boredom the vast majority of people will find they will do more when they are up to it. In actual fact patients often end up doing more than they are able to some of the time out of frustration , and/or boredom, and just to experience life a little. I have never personally come across a patient who is doing too little, or less than they are able to do.

Obviously it is worth testing the waters every now and again to see if you can increase a little or do something you haven't tried in a while but I think an ME patient has to be careful with this. Major relapses sometimes happen after a lot of little setbacks and even a mild ME case can end up severe if a patient continually pushes through their limitations.

Anyway I just think that the way the sentence is written that someone could assume that the patient should expect to feel worse when they increase activity (

"patients should start to increase stressors slowly even if this means a temporary setback."

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) but that they should just keep doing it and they will get used to it (like graded exercise for patients who are deconditioned from other conditions or injuries who will often feel worse on doing something initially but who will build up strength and be able to increase activity more and more and build themselves up gradually through graded exercise).

I am not saying that this is necessarily how this sentence was meant to be read but I think it could easily be read this way and be used by some doctors or psychiatrists or graded exercise advocates to bolster their argument. I think that the context in which things are written is important. At the moment the context is is that a lot of doctors still know little or nothing of ME and many just think we are deconditioned and just need to start doing more to feel better. They think that because we are so deconditioned (and possibly stressed and 'worrying' about the activity) that initially activities will make us feel worse but that if we keep up the activity we will get used to it and feel better over time and be able to increase activity over time.

Also another problem with this sentence

Depending upon the degree of physiological brain dysfunction, patients should start to increase stressors slowly even if this means a temporary setback.

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is that in general patients will not have any objective proof of their degree of brain impairment (and there might be more to problems with exercise and post-exertional malaise than brain dysfunction) and I have never heard of anyone who could say with accuracy that based on a brain scan they can tell how long someone can walk (for example) or do other activities. The only way a patient can tell how much they can do is by seeing their reaction to activity over a few days after they do things.

"This is neither an easy nor a fast process and again, depending upon the degree of brain dysfunction, may take years until the patient can resume a relatively normal life activity"

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Personally I think the sentence might be read by some as saying that recovery is difficult and takes motivation and long-term commitment from the patient but that if they stick at it they will manage to improve. Again this was possibly not meant to be read in this way but it could be interpreted that way in light of the proceeding sentences.

And more importantly what about the vast number of patients (possibly the majority?) who don't get better or who only improve up to a very low point nowhere near a normal life? Not to mention people who end up severe or mostly severe for the rest of their lives? Again these sentences could mislead doctors, or give patients false hope that they should recover even if slowly, and that gradually doing more is part of the recovery process (and not a result of recovery). The presumption of recovery can put a lot of pressure on a patient as doctors (family etc.) can get annoyed and start blaming the patient if they don't recover.

Also again there is probably more to ME patients problems than brain dysfunction so it is probably not just the degree of brain dysfunction that dictates how long they will be sick for, or how sick/disabled they will be.

4. But then this part improves and ends with sentences which are mostly good but which sort of contradict the ones above

If the M.E. patient conforms to the guidelines set out in this definition, the insurance company can only make the patient worse by instituting progressive aggressive forced physical and intellectual activity. M.E. is a variable but always, serious diffuse brain injury and permanent damage can be done to the M.E. patient by non-judicious pseudo-treatment.

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(Of course few patients would conform to the guidelines in the definition as they won't have access to the tests mentioned or specialists to read the tests. Also even gentle graded exercise programs can make a patient worse as patients have a ceiling to what they can do and they cannot go above it, whether gently or aggressively, until their illness improves.).

Almost everyone (high 90th percentile) has some of the Herpes viruses in their body, but they usually stay latent after recovering from the initial infection. When the cells those viruses hide in are damaged, the viruses are forced out, and become active again.

Most people acquire these viruses in childhood, so it seems somewhat unlikely that they're the cause of ME/CFS. It's a lot more likely that damage done by ME/CFS causes them to flare up.

Some viruses such as HHV 7 can cause other viruses, such as HHV 4 (EBV/mono) to become active again, but this usually happens in early childhood (before age 6).

But what about the studies that show that a certain percentage of EBV/Q Fever/Ross River Virus cases go on to develop ME/CFS? Also i've heard of a similar study for SARS cases, but i've never seen it. I don't know what causes ME/CFS, but in these cases it seems these acute infections play a role in causing it.

Yeah, but there's a lot of different viruses coming right before ME. So it's probably not a virus causing ME, but it might be a reaction to infection in general that is triggering it, or triggering the onset of the major symptoms.

Dolphin -
I thought BH and Nightingale were the same thing... Isn't it HIS foundation?

Justy -
You are right. I'm afraid that BH might do more harm than good. I have a firm ME diagnosis (without the brain lesions, though) and I did win my disability case (insurance company + government). It would be very bad if BH would tell them that I don't have ME.

I thought I heard BH say that ME does not have any definition...

GAMBOA -
My symptoms are the same as the Chiari ones. I have constant sore throat, headaches, fatigue (I call it cellular exhaustion). I do have something going on in the thyroid region. Many lumps (they had to remove 3) but no malignancy. I have one left that we are monitoring closely. Like you, my cortisol was low (5 years ago) and they ruled out MS (I lived for 10 years with a "probable" MS diagnosis). I can't remember about the DHEA. The problem is that I am always borderline in all categories but it's never enough to act on it.

Thank you for the link on Nutrichem. I am always worrying about the results they gave us. How true are they? Do they really do all these tests?

This comment could also be used to blame the patient for getting sicker or not getting better. So someone might think that if lack of activity makes the patient worse then the patient is at fault for getting worse because they did not do enough activity. We know that in the vast majority of cases patients will be doing as much as they can and it will be the illness itself that for some organic reason that gets worse (because that is how the illness seems to progress in some people or there is an environmental stressor such as the patient gets an infection, does too much, has a drug reaction or something like this) not because of lack of activity on the behalf of the patient.

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When I went for a second opinion, the internist I saw (for about 15 minutes!) told me that what I needed was CBT and GET. He had no idea how sick I was (bed bound). When I told my GP, his reaction was let's try it and see how well you can take it. The pain clinic had to do so many changes to my exercise program that they told me to stop. Just getting there and walking to the gym was enough to put me back in bed for the next three days. They were doing more harm than good.

My GP never pushed exercising after that. He understands that if I choose to exercise, it means I have to cut elsewhere. This means no supper on the table, or no laundry.

However, he told me that the lack of activity will make me worse. Each organ will fail me, eventually. I know it's happening as we speak...

My question is: Should I push through it or not? There are several stories out there of people who have made it because they chose to push through it. There is always the fear of crashing/getting worse. I guess I'm not stubborn enough or I don't have enough will power...

Well, at least, we have one thing that differentiates us from other patients: They can prove that exercising does affect us big time (Light research). Eventually, they will be able to figure out if exercising helps or not with PEM.

From Orla's 3rd post:
"Personally I think the sentence might be read by some as saying that recovery is difficult and takes motivation and long-term commitment from the patient but that if they stick at it they will manage to improve. Again this was possibly not meant to be read in this way but it could be interpreted that way in light of the proceeding sentences. "

I wonder if they could follow a group of athletes (they probably have more will power than most of us?) and see how many do improve after sticking to their exercising program? Do athletes get better recovery results? Do we know this?

On page 20: Discussion and Differential Diagnosis of M.E.
In bold, on top of the page:
"Any attempt to develop a workable definition of M.E. is fraught with multiple seemingly insurmountable difficulties."

Then, he tries to explain his point in SECTION 1.

-- Lack of Detail (most epidemic studies not sufficient enough to provide comprehensive info),
-- No Long-term Follow-up,
-- No in Depth Patient Investigation -
What conclusions can you draw from...
"Other than MY OWN multi system, multi-organ assessment of M.E. and CFS patients published in Missed Diagnoses by B. Hyde (Lulu.com), there is little in the literature to explore why these patients are persistently and chronically ill."
Isn't it ironic that HE mentions that?
-- No funding (except for the 1934 study),
-- Fear of Ridicule (physicians will not research it) and Patients Accused of being Hysterical,
-- 1998 and 1994 CDC/NIH definitions of CFS (it is not M.E.),
-- Garbage Bag Disease (Physicians don't have time to investigate).

In SECTION 2, he lists 17 infectious agents that have been linked to M.E. since 1934.
He repeats several times that only enteroviruses could be the 'real' cause of M.E.
(There are 4 pages -trying to prove his point- on this subject)

"Patient groups with little real knowledge of these infectious groups have been formed and resemble movie star fan clubs and are vociferous in pleading the cause of a particular infectious agent."

He talks highly of Dr. Bernadette McLaughlin of the Ontario Government Viral laboratory of Toronto whose reasearch did not "find any percentage increase in EBV recovery from these patients during the 1984-1989 period." AND "The significantly increased viral recoveries were only enteroviruses".
1984 - 1985: 400 cases of enterovirus infections per year
1986-1988: 500 cases per year and dropped rapidly off

Canadian patients - tested by Ruchill Hospital team (See J. Med Virol. 1999 July)
NO enteroviral association in any of the 60 gradual onset CFS patients
In the 40 acute onset M.E. type patients: 50% were positive for enterovirus (PCR)

By the way, he mentions that "Dr. John Chia has ably demonstrated the anatomical proof of chronic enteroviruses in M.E. patients." (really? I did not think his work was considered a "proof").

Too tired to keep going. I will continue tomorrow?
(P.S. Does anyone get something out of what I am writing or am I wasting my time? Should I keep going... I won't if there is no interest... I could save my energy for something else.)

Dolphin -
I thought BH and Nightingale were the same thing... Isn't it HIS foundation?

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I'm not 100% sure.

I did say:

The frustrating thing is that the Nightingale Research Foundation and BH work side by side. I'm not sure how it works directly but I'm not sure if these days the Nightingale Research Foundation does much/anything "these days" (e.g. last 5-10+ years) that is not BH-related.

It's one of the reasons I like it when I see other research funds say their money will go to published studies/they insist money will only be given out to researchers who publish their findings.

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I think in the very early days e.g. early 1990s, they may have supported other researchers.
But I haven't heard anything in recent times to disagree with you when you say it's his foundation.
It's all a bit odd.
Another thing that was odd was the way somebody in the office was very annoyed that they had been nominated and were taking part in the Vivint competition. This was a competition offering free money and they didn't want to be in it.

You are certainly NOT wasting your time Boule de Feu - having used sections of his "Scientific & Clinical" to take to my Consultant Neurologist in the early days (and with which he agreed as the symptoms are spelled out), it is very interesting to read all Byron Hyde has to say now - even if no-one is quite there yet. Just wonder what he means by 1984-1989 - novel or untyped enteroviruses.

Thank you for the link on Nutrichem. I am always worrying about the results they gave us. How true are they? Do they really do all these tests?[/QUOTE]

I had the OxyMark Panel done by Nutrichem and it tests RBC EFA, Oxidative Stress, Anti-oxidant status, Amino Acids, Organic Acids and Iron Metabolsim. All were abnormal. They made up a custom formula that cost me $$$ -didn't do much for me. I increased my EFA's (Omega 3) with fish oils since they were way below normal and this helped with cognitive issues.

I found it all very expensive and in the end it didn't improve my health.

Another thing that was odd was the way somebody in the office was very annoyed that they had been nominated and were taking part in the Vivint competition. This was a competition offering free money and they didn't want to be in it.

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Could it be that they are not a charity?
(it's not a statement, it's a real question)

You are certainly NOT wasting your time Boule de Feu - having used sections of his "Scientific & Clinical" to take to my Consultant Neurologist in the early days (and with which he agreed as the symptoms are spelled out), it is very interesting to read all Byron Hyde has to say now - even if no-one is quite there yet.

Thank you for the link on Nutrichem. I am always worrying about the results they gave us. How true are they? Do they really do all these tests?
I had the OxyMark Panel done by Nutrichem and it tests RBC EFA, Oxidative Stress, Anti-oxidant status, Amino Acids, Organic Acids and Iron Metabolsim. All were abnormal. They made up a custom formula that cost me $$$ -didn't do much for me. I increased my EFA's (Omega 3) with fish oils since they were way below normal and this helped with cognitive issues.

I found it all very expensive and in the end it didn't improve my health.

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Yes it is very expensive and that is one of the problems with having this illness. We all keep trying different things to try and feel better but end up just wasting our money.

One thing that Nutrichem found that my other docs hadn't was a high level of gluten antibodies. I had the standard blood and urine test done first which showed I had abnormal gut flora. This led to another test for gluten antibodies in the stool in which I scored a high amount. I took this to my GP who ordered a Celiac Panel, something she never wanted to do before. I tested positive for the anti-gluten antibody but not the other Celiac antibody. I then was sent for an upper GI scope and biopsies to see if I actually had Celiac Disease. My biopsies were negative but since I still have antibodies to gluten the gastroenterologist said to avoid wheat but not as strictly as if I had Celiac . The bottom line is that by cutting out wheat I might start to feel better- not cured- after a while. Avoiding anything that stresses the body and leads to inflammation and increased immune response could potentially improve some symptoms.

The other good thing about having the Nutrichem testing done was that it confirmed that I have a lot of abnormal biochemistry. I take the vitamin formula from them and even if I don't feel better at least I can think that perhaps it is correcting some nutrient deficiencies that could be harming or aging my body. I, like many people with ME/CFS have a low level of antioxidants which can really damage a lot of things in the body. Basically I am rusting away. By taking antioxidant supplements perhaps I can fix or stop some of this rusting, even if I don't actually feel better.

Have you followed the Richvank threads about how important the TYPE of Vit. you take is? I haven't got my brain around it all yet since it is very complicated but that could explain why the vitamin supplements many of us take aren't doing anything. My next step, once I have the energy, is to take this information from Richvank to Nutrichem and see what they think.